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In November 1994, when he first announced to the American public that he was suffering from Alzheimers, former President Ronald Reagan wrote that he was beginning the journey that will lead me into the sunset of my life.
Now that sun has set, and Reagan has died at age 93. Although his family didnt often talk publicly about the toll that Alzheimers took on his life and theirs, the Reagans have been instrumental in raising awareness and research funding for the disease, which affects an estimated more than four million Americans.
Alzheimers is a devastating, progressive brain disorder that usually strikes people older than 65, gradually stealing their memory, speech, perception of the world around them and ability to take care of themselves.
When Did Symptoms Begin?
Immediately after Reagans disclosure that he had Alzheimers, many people wondered if he had had the disease while in office from 1981 to 1989. He was nearly 70 when he became president, and he was the nations oldest chief executive. Throughout both his terms, he showed occasional memory lapses, often had to use cue cards and sometimes dozed off during meetings behavior that sometimes made him the butt of comedy routines and political satire.
In fact, even before he took office, Reagan told a New York Times reporter that he wanted his doctors to watch him for signs of senility because his mother had been senile for several years before she died. While its unclear whether Reagans mother had Alzheimers or some other form of dementia, scientists say they believe genetic factors are at work in up to half of all cases of Alzheimers.
Physically, though, Reagan was remarkably strong. During his terms, he survived minor skin cancer, the removal of malignant polyps from his colon and a gunshot wound from a 1981 attempt on his life.
Doctors and Reagans closest associates insist he didnt show signs of anything more serious than normal forgetfulness until 1992, nearly four years after he left office. One of his doctors remembers that during a visit in September that year, the former president seemed distant. And after their conversation, Reagan asked him, What am I supposed to do next?
One year later, Reagan went through the formal mental tests used to diagnose memory disorders. Repeated testing and further observation during the next year led to his 1994 revelation that he had Alzheimers. At the time, doctors said he was in the early stages of the disease.
During that phase, Alzheimers patients usually have fairly mild problems, like forgetting to lock the front door or turn off the oven. Patients often have trouble learning new information or remembering recent events. When Reagan was in the early stages of the disease, friends and doctors noticed he became disoriented and, on a couple of occasions, seemed to have difficulty speaking publicly or reading lines from a Teleprompter.
Later, the memory loss became more severe. In 1997, the New York Times reported in a comprehensive story about the presidents condition that he appeared to have hit the middle stage of the disease. He recognized few people other than his wife, Nancy, and seemed not to understand that he was once one of the most powerful men in the world.
The middle stage of Alzheimers is the longest, lasting from three to 18 years, experts say. It begins with increasing memory loss and disorientation, and ends with the patient needing 24-hour care.
Memory Lapses to Time Lapses
Time confusion is a common symptom as the disease progresses. During the middle phase, Alzheimers patients often cant remember what day or month it is. Reagan, for example, sometimes woke up in the middle of the night looking for breakfast.
Although most people associate Alzheimers with a loss of memory, other symptoms are also prominent. Patients often have trouble speaking, as Reagan did. Patti Davis, his daughter, told a Cleveland audience in early 1999 that her father spent long afternoons in silence, and that she communicated with him by looking into his eyes.
For as long as he could, Reagan maintained a schedule intended to be mentally stimulating. In 1997, he was still going to his office for four or five hours every weekday, reading newspapers and meeting with visitors for photo opportunities. Two years later, he had cut that to one day a week.
He also tried to stay physically active. In the summer of 1999, as unsubstantiated rumors swirled that Reagan was on a 36-hour death watch, the former president was taking regular walks along Californias Venice Beach, visiting local parks to watch sporting events and swimming in the pool at his home.
But Reagan had a luxury no other Alzheimers patient has. Every time he went out, Secret Service agents went with him, keeping him safe. One of the most troubling aspects of advanced Alzheimers is the tendency of some people with the illness to wander off and get lost, even though they may be in familiar surroundings.
Even patients with full-time caregivers or those living in nursing homes may wander off, only to find themselves unable to get back home. These episodes can be extremely frightening for loved ones and potentially life-threatening for the patients.
Changes in behavior can become more dramatic as the disease progresses. For some with the illness, brain deterioration leads to paranoia or delusional thoughts. In the end, most Alzheimers patients lose the ability to communicate and in their final months require 24-hour care because they are unable to do simple things such as eating, using the bathroom and bathing.
Alzheimers patients typically live for seven to 10 years after theyre diagnosed. But for some patients, the disease lingers for up to 20 years. Although it does cause brain failure, most patients go through such physical decline that they eventually succumb to some other disease, often pneumonia which sources say Reagan battled in his final hours.
Treatment But No Cure
Early on in the presidents illness, doctors tried treating him with drugs to lessen his symptoms. They didnt work. Although research continues and may offer promising treatments in the future, for now there is no cure for Alzheimers.
Drugs called cholinesterase inhibitors may help some patients in the early or middle stages of Alzheimer's stay sharp mentally, and other drugs may help with secondary problems such as anxiety, depression or insomnia. But nothing can reverse the course of the disease.
Thats why Reagan knew, when he was first diagnosed, that it was just a matter of time before the illness took his life. And as the nation marks his passing, thousands of elderly Americans will begin that same journey into their own sunsets.
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